Dhingra on Vicedo, 'Intelligent Love: The Story of Clara Park, Her Autistic Daughter, and the Myth of the Refrigerator Mother'

Marga Vicedo’s book about Clara Claiborne Park (1923-2010) is a biography of the activist mother of an autistic person, Jessica Park, as well as a history of autism research in twentieth-century America. Through Clara’s life, Intelligent Love effectively makes a philosophical point: “that objectivity and reason are not incompatible with love and can be a valuable part of mothering; further that intelligent love could be also a way to reach reliable knowledge” (p. 131).

Writing about Clara, Vicedo states, “For a white, upper-class young woman in mid-century America, things were going as expected” in 1945 (p. 19). Clara had graduated from Harvard and married a young physicist, David, who was soon to teach at Williams College. To be sure, as Clara recognized, the society that celebrated Norman Mailer’s The Naked and the Dead (1948) saw her experiences as “tangential to the main business of the world” (p. 21). She had known Mailer at Harvard. Nevertheless, always pragmatic, Clara settled to a life of motherhood—“a garden, a piano, books, and home-cooked dinners together”—while teaching English at a newly established Massachusetts community college (p. 29). Then, her fourth child, Jessica, was born in 1958, a few weeks before the film release of The Naked and the Dead.

In 1961, Jessy was first diagnosed as an autistic child. But what did this mean? Not for the last time in Intelligent Love, Vicedo switches genres, here to the history of medical research. The term “autism” was coined in 1911 by the Swiss psychiatrist Eugen Bleuler (1857-1939) to refer to the tendency, pronounced in schizophrenics, to self-isolate. Bleuler also thought that schizophrenics should be sterilized; this was never safely apolitical. Later research separated autism from schizophrenia. In the United States, Leo Kanner (1894-1981) distinguished the growing disconnection of those with childhood schizophrenia from autistic children who, in his words, “gradually compromise by extending cautious feelers into a world in which they have been total strangers from the beginning” (p. 49). More important, though, Kanner began to see mothers as responsible.

Amid an emphasis on emotions in the cold technocratic postwar world, as well as the continuing focus of psychoanalysis on a child’s relationship with their mother, Kanner began to change his mind from thinking that children were autistic “from the beginning.” Instead, he said, they “were kept neatly in refrigerators which did not defrost” (p. 57). He now believed that the mothers of autistic children had an “impersonal, mechanized relation with their children” (p. 59). Of course, this was not just Kanner. In his 1959 Scientific American article, “Joey: A ‘Mechanical Boy,’” Bruno Bettelheim asked, “How had Joey become a human machine?” (p. 64). The answer was Joey’s mother.

Returning to the Park family, Vicedo follows them to the Putnam’s Children Center in Massachusetts, where Clara felt as though she and her husband, David, were put “on trial” (p. 71). David spoke to a doctor, while Clara was relegated to a social worker. Later, in England for David’s research, they visited the Hampstead Clinic, where Clara was treated as a partner, not a defendant, for the very first time. The medical report says that she responded, “You don’t know how I needed that” (p. 83). But they also thought that she needed therapy.

This therapy, though, proved to be pragmatic and focused on working with Jessy, including the use of a “social story,” which prepares a child for an activity with an illustrated narrative. Clara found that Jessy was learning. Clara also kept reading, and upon her return to the United States, came upon Bernard Rimland’s Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior (1964), which did not blame parents for autism. After all, Rimland had an autistic son; his own wife had been blamed. Insightfully, though, Vicedo notes that Rimland never mentioned his son in Infantile Autism, which was meant to be the scientific work of a psychologist. This raises questions about why so-called objectivity seemed to rule out all subjectivity.

Rimland’s book included a questionnaire to identify infantile autism that parents could complete and return and encouraged networking among them. He soon received a letter from Clara. Sarcastically, she wrote, “Being a ringer for Kanner’s parents, I have, of course, pages of records, observations, interpretations, and hypotheses” (p. 104). Rimland’s efforts led to the formation, in 1966, of the National Society for Autistic Children, which centered a hybridized expertise—parental expertise, necessarily subjective, pollinating that of researchers.

In her letter, Clara engaged with Rimland’s ideas; she thought autism was primarily affective, not cognitive. She remained pragmatic, focused on her work with Jessy, as Vicedo writes, “luring her—lovingly, relentlessly, and intelligently—into ways of acting that connected her more with the people around her” (p. 120). Vicedo immediately notes objections to changing autistic behavior; she says that these objections emerged from self-reflection that itself emerged from work like Clara’s. Clara began to think of writing a book because she herself would have wanted to read a book written by a fellow parent. The Siege: The First Eight Years of an Autistic Child was published in 1967.

As Vicedo notes, the book, which was honest about all the possible causes of Jessy’s autism and Clara’s strategies for helping her, would concern present-day autistic advocates because of the central metaphor of a “siege.” The metaphor is drawn from a John Donne sonnet, so it may express a universal need to be besieged by love, but, then again, this is hardly elaborated in The Siege. However, Vicedo also notes some autistic people have described being in a “silent prison,” and Clara never anointed herself as savior. Finally, Clara’s Skinneresque means of modifying Jessy’s behavior are not far different from how most parents shape their children.

And, thus, we get to the title of Vicedo’s book. Vicedo claims that Clara meant to defend “intelligent” love, whereas the experts, including Kanner and Bettelheim, argued that children needed “natural” love, “untainted by intellectual and professional aspirations” (p. 129). Clara asked why a good mother could not pragmatically engage with research, especially with notes carefully compiled about her daughter. To answer this question, Vicedo usefully shifts back to the history of science. Charles Darwin had started to study emotions after his eldest son was born in 1839, with nobody questioning his objectivity, but the twentieth-century development of psychology progressed by separating emotions from scientific inquiry. It was not until the 1960s that psychologists began to return to the view that parents might contribute to research. Clara pointed out the privileged position of parents as observers. After all, they were always there.

The Siege was warmly received by other parents of autistic children and, Vicedo writes, foreshadowed feminist critiques of science in the next generation. The same year, though, saw the publication of Bettelheim’s The Empty Fortress: Infantile Autism and the Birth of the Self, which drew on psychoanalysis and animal research, including Harry Harlow’s experiments with baby monkeys raised with wire-and-cloth mothers, to suggest that children without maternal love would fail to maintain interest in and communicate with the world. Bettelheim claimed, “the precipitating factor in infantile autism is the parent’s wish that his child should not exist,” but he might as well have said the “mother’s wish” (p. 141). Inevitably, The Siege was “to a large extent an act of self-defense” (p. 127). Bettelheim also claimed he could cure autism. Clara found his book “theoretically worthless” and the claim of a cure “baseless” (p. 142). She was hardly alone, but, as Vicedo recognizes, Bettelheim presented a seductive “morality tale” about the “dehumanized modern world” (p. 147). The Empty Fortress became a bestseller. In retrospect, though, The Siege has aged better, because, as James T. Fisher has noted, it was not a predictable conversion narrative.[1]

Two influential psychologists in the 1970s, Eric Schopler and Ivar Lovaas, began to encourage collaboration with parents. Schopler’s TEACCH® (founded as Treatment and Education of Autistic and related Communications Handicapped Children) program was the first program for autistic children to be funded by a state government. It involved parents keeping “daily logs,” which other researchers had seen as the sign of “cold” parenting. When he became editor of the Journal of Autism and Child Schizophrenia in 1974, Schopler established a “Parents Speak” column. Lovaas’s approach, the controversial Applied Behavior Analysis (ABA), to which Clara lent support, also required parents to individualize the process. Vicedo noted that ABA, whatever its flaws, empowered parents and transformed autism from mental disease to developmental condition. Once more, Vicedo argues that the appreciation of neurodiversity came as parents worked with their autistic children.

For instance, as time passed, Clara, always pragmatic, learned that she could draw up contracts with the teenaged Jessy, who could win popsicles or the like by gaining points. These contracts were drawn up for not only Jessy but also the whole family. They departed from ABA practice, as Jessy could set goals and choose rewards and punishments as she saw fit. Jessy had the right to go to school, and did so, her teachers disregarding a school psychologist who counseled that the extent of her mathematics education should be to “handle her periods” (p. 173). In the 1970s, Clara began encouraging her daughter to share her experiences and brought her to a lecture at Smith College. “Indeed, learning is so often reciprocal,” as Vicedo writes (p. 186).

Clara's Exiting Nirvana: A Daughter’s Life with Autism was published in 2001, with “Nirvana,” instead of “siege,” as the title image to show that Jessy was happy. Jessy retained a logical mind if she still had difficulty in “perspective-taking” (p. 45). This did not signify deficit: perhaps, on the other hand, Clara speculates, we ourselves fail to be fully logical. Here, Clara’s life realizes in the incipient recognition of neurodiversity. In the meanwhile, Jessy had become an accomplished artist, and her work shows genuine creativity. Most tellingly, reviews of Exiting Nirvana praised what Oliver Sacks called its “intelligence, a clear-sightedness, an insight, and a love that brought out to the full the absolute strangeness, the ‘otherness’ of the autistic mind” (p. 206, emphasis added). Even if we may wish to revise “absolute strangeness,” the last sentence of Vicedo’s book is, rightly, “No dichotomies” (p. 218).

Those two words express the brilliance of Vicedo’s book, which shows that the pseudo-scientific division between intelligence and love is artificial, and the division between behavioral modification and neurodiversity may at least be permeable. Some readers will want much more on the latter. I think that it raises three questions for further exploration.

As Vicedo recognizes, Jessy lived during a period when Arthur Miller institutionalized his son, who had Down’s syndrome, and never mentioned Daniel Miller in his autobiography, and in which Willowbrook housed several thousand people in very poor conditions. The Parks were advised to place Jessy in an institution. They didn’t, but this means Clara’s love for her daughter cannot be taken for granted. Clara ends a 1982 epilogue to a new edition of The Siege by recognizing that she still feels “pain” when looking at Jessy’s friends and imagining “all she cannot be.” Nevertheless, she concludes that “we have learned the lesson that no one studies willingly, the hard, slow lesson of Sophocles and Shakespeare—that one grows by suffering”—and “if today I were given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands.”[2] Even later, in Exiting Nirvana, Clara recognizes, “we no longer even want [Jessy] to exit Nirvana all the way.”[3] This transformation from a sense of loss to the awareness that parenting a child with disabilities is a gift that reveals a deeper understanding of life is not uncommon, but does it have a history?[4]

Second, given Jessy’s artwork, I wonder if we might be able to explore what Clara did not see about her daughter. In Exiting Nirvana, Clara describes Jessy’s art as beautiful but characterized by autistic exactness: “Buildings are straightforward, straight-edged, their outlines clear” but still characterized by a “defective ‘theory of mind’” that keeps any deeper meaning “wholly idiosyncratic.”[5] She later compares Jessy to Wordsworth’s Peter Bell.[6] Yet David Ortendahl notes that Jessy creates and transforms objects for the sake of the gestalt, adding wood grain to a silo, for instance. Jessy has also depicted dark windows, showing, she says, “the inside of the barn is dark,” because she recognizes a space and “point of view” beyond her own.[7] Claire Barber-Stetson has noted that Jessy’s art shows both the effects of mentoring and interactions with contemporary art, whether Cai Guo-Qiang’s installations or the Tribute in Light memorial for the World Trade Center.[8] These recognitions suggest broader and unexplored ways that Jessy might further contribute to our perception of reality.

Finally, there is the question of what generally we might say about the necessity of collaborations between parents and researchers and hybridized models of expertise. After all, such collaborations have not always been easy. Comparatively, in France, as Jonathyne Briggs has recently written, parents influenced by The Siege in translation had to strike a more combative approach than in the United States because of the dominance of psychoanalysis.[9] On a different subject, in the US, Emily Hanford’s journalism about the teaching of reading features teachers who grasp that their celebrated method is wrong when it is applied to their children. A Georgia teacher notices her son is memorizing books that he is supposed to be reading, despite his supposed reading level. “And she was thinking—maybe the school doesn’t know how to help Matthew.”[10] Another teacher recounts, “My child looked at me and she was really nervous and anxious, and she just says, ‘I can’t read.’”[11] Dyslexia plays a role in this. Is this particularly telling, more than just a “twist” on a podcast?

To be sure, parents can be wrong. But, as Clara writes in The Siege, researchers can ironically approximate a certain stereotype of self-isolation. Intelligence without love can mean what Clara encountered with certain professionals, “that imperviousness, that terrible silence, those eyes that turn away”—an inability to give respect to mothers that revealed their near-complete lack of imagination.[12]

At the very least, Vicedo’s brilliant book shows the epistemological danger of “eyes that turn away.”

Notes

[1]. James T. Fisher, “No Search, No Subject? Autism and the American Conversion Narrative,” in Autism and Representation, ed. Mark Osteen (New York: Routledge, 2008), 62.

[2]. Clara Claiborne Park, The Siege: The First Eight Years of an Autistic Child with an Epilogue, Fifteen Years Later (New York: Little, Brown, and Company, 1982), 320.

[3]. Clara Claiborne Park, Exiting Nirvana: A Daughter’s Life with Autism (New York: Little, Brown, and Company, 2001), 201. A longer discussion of Clara’s development is in Sheryl Stevenson, “(M)Othering and Autism: Maternal Rhetorics of Self-revision,” in Autism and Representation, ed. Mark Osteen (New York: Routledge, 2008), 205-7.

[4]. See, for instance, Shabana Jausar, Ronna F. Jevne, and Dick Sobsey, “Hope in Families of Children with Developmental Disabilities,” Journal on Developmental Disabilities 10, no. 1 (2003): 35-46, esp. 40-41. See also Neil Dhingra and Joel D. Miller, “Dependent Rational Activists: Disability, Student Activism, and Special Education,” Philosophical Inquiry in Education 28, no. 2 (2021): 110-28, esp. 121-22.

[5]. Park, Exiting Nirvana, 131, 133, 134.

[6]. Clara Claiborne Park, “Autism into Art,” in Exploring Nirvana: The Art of Jessica Park, ed. Tony Gengarelly and Adria A. Weatherbee (North Adams, MA: Massachusetts College of Liberal Arts Book Project, 2008), 15.

[7]. “15.1 The Smiths’ Caretaker Farm and the Silo” and “15.2 The Schoplers’ Barn,” in Gengarelly and Weatherbee, Exploring Nirvana, 59.

[8]. Claire Barber-Stetson. “A Vibrant Autistic Aesthetic and the Limits of Art Brut,” Journal of Literary & Cultural Disability Studies 11, no. 2 (2017): 113-31.

[9]. Jonathyne Briggs, “From Collaboration to Resistance: The Family Dynamic in Autism Literature in Contemporary France,” Contemporary European History (2022): 1-16.

[10]. Emily Hanford, “Episode 5: The Company,” in Sold a Story, American Public Media, produced by Emily Hanford and Christopher Peak, November 10, 2022, podcast, 47:22, https://www.apmreports.org/episode/2022/11/10/sold-a-story-e5-the-company.

[11]. Emily Hanford, “Episode 6: The Reckoning,” in Sold a Story, American Public Media, produced by Emily Hanford and Christopher Peak, November 17, 2022, podcast, 41:41, https://www.apmreports.org/episode/2022/11/17/sold-a-story-e6-the-reckoning.

[12]. Park, The Siege, 143.